any test other than ca125?

[Goodgirl98]

Hello everyone, recently joined this forum, from India. I am 45 years old and diagnosed with ovarian cancer, stage 4 a year ago. After 6 rounds of chemo and a major debulking surgery off the abdomen area, I am currently on olaparib as I am BRCA1 positive. Wanted to check if any other tests other than ca125 is needed to keep an eye on our health status? I have been currently advised to take this once in 3 months (apart from monthly CBC for my Haemoglobin/platelets check)

[Lyndy2]

Hello Goodgirl98, I am also BRCA 1 and on Olaparib. Those are the tests I have but my oncologist also does a CT scan periodically x

[Goodgirl98 in reply to Lyndy2]

thank you. Good to read your bio. keep on strong!

[Katmal-UK]

Hi, I have been on Olaparib for just under 9 years. I have a CA125 done every 12 weeks and currently an annual scan. My CA125 is very indicative for me (having had 2 recurrences previously. X

[Goodgirl98 in reply to Katmal-UK]

thank you. Your bio was so inspiring to read. Glad to see olaparib doing its job. Had a doubt though: my oncologist had mentioned that olaparib can be prescribed only for a maximum of 24 months. But you are on it much longer; are you aware of this? Not sure if this is an India thing.

[Katmal-UK in reply to Goodgirl98]

Hi. When they originally trialled Olaparib worldwide under the SOLO1 trial the protocol was for 2 years. They then did a SOLO2 worldwide trial (295 patients) whereby the protocol was for the drug to be taken until no longer of benefit or the patient no longer wishes to participate. It was a double blind trial which means you don’t know if you are on it or not, nor does your oncologist though side effects will give an indication. As luck would have it I got the drug through randomisation and although the trial has ended I continue to take it . I have been transferred over to the ROSY-O trial which is basically to continue to collect data. At the end of December I will have been taking it for 9 years.

[Goodgirl98 in reply to Katmal-UK]

Wow, that's great. I have to read up more to understand how the trials work. We are paying for the Olaparib (subsided cost) but I am being monitored and coincidentally it is called SOLO-1 trial. But I seem to be getting the actual meds and no one has talked to us about double blind trials etc... I will talk to the AZ support team to understand this more.

[Katmal-UK in reply to Goodgirl98]

A trial isn’t paid for, unless it’s different where you are? The SOLO1 trial ended years back.

[Goodgirl98 in reply to Katmal-UK]

got it. I will check. I am aware that olaparib became available in India only from 2019, so possibly there is some data being gathered. Thanks for your detailed answers.

[Katmal-UK in reply to Goodgirl98]

oh, could be they have ‘restarted’ the trial in India.

[Trickysite]

hallo goodgirl,

I am BRCa 2 stage 4 high grade serous and have been on olaparib for a year. I have monthly blood tests at the Marsden which presumably include CA125 and six monthly scans. I have had lots of wobbles with anaemia on olaparib, and a few infections which may be why I have monthly blood tests. My best wishes, Emma x

[Goodgirl98 in reply to Trickysite]

thanks for sharing. My Haemoglobin dipped in the first 2 months and hence the olaparib dose got reduced to 2 tabs a day (from 4). Along with an iron supplement, this is going up. So my blood tests are every 2 months and ca125 is every quarter. Take care!

[SophieZ]

There is a test called a Circulating Tumor Cell test that originated in Switzerland in 2004 called the RGCC test. Some integrative oncologists utilize it in the US. There is a version of it that was FDA approved a couple of years ago. One company that does it is called Signatera and CellSearch but there are a bunch more. This is a simple blood draw. If any circulating tumor cells (cells that have broken off from an existing tumor) or tumor DNA is found then they are able to tell where in the body the tumor originated as well as any genetic mutations. This could help with early recurrence detection as well as matching with treatments based on genetic mutations. This test is essentially a liquid biopsy and is able to detect tumors before they are even large enough to appear on a scan.

Most oncologists don’t use it for “clinical application” yet because its supposedly “new” technology even though its been around since 2004. MD Anderson just adopted it under standard of care at their practice 2 years ago. Your oncologist could order the test even if they don’t typically do so. This might give you a better idea of your situation instead of waiting and watching on scans. If any circulating tumor cells are found the original RGCC test can even test 53 types of chemo on your cells to find out if they are chemo sensitive.

There is a Bill in the Senate that was introduced in 2021 called the Medicare Multi-Cancer Early Detection Screening Coverage Act that is pushing to have this test covered by medicare as a screening and early detection tool for the general public as well as a way for cancer patients to be monitored after treatment. I just spoke to my oncologist about it and after some insisting he agreed to order the test. This might help you have some peace of mind if you have a more accurate screening tool utilized like this blood test and a better assessment of your condition.

[Goodgirl98 in reply to SophieZ]

That's great to know. I will check with my oncologist when I meet him next in December.

[delia2]

Hi. I have CA125 checked every three months and a CT scan every six months. CA125 isn’t a marker for me but we check it anyway. As Kathy explained the protocol is to take Olaparib for only two years after frontline but after recurrence you take it until it stops working.

[purfekt10]

I'm in the USA and there are a couple of tests available to detect ovarian cancer much earlier than the CA 125 test. The names are Galleri and Signatara. I had the Signatara (Natera) test done about four weeks ago. Information about both tests are available on the Internet.

[OvacomeSupport Partner My Ovacome Team in reply to purfekt10]

Dear purfekt10,

Thank you for sharing this information.

Just a note for our UK members to clarify about the tests mentioned:

The Galleri test is only available in the UK as part of the NHS Galleri trial for people without cancer, and as part of the SYMPLIFY study for people with possible cancer symptoms. Both are closed for recruitment and we have some time to wait to find out what the data will show. It is not available outside these trials.

The National Institute for Health and Care Excellence (NICE) evaluated the use of Signatera and concluded there is not yet sufficient evidence to recommend its use. Signatera is currently only used in the NHS in research or pilots. You can read more about this evaluation here: nice.org.uk/advice/mib307/c...

If you have any questions, please do get in touch on [e-mail]

Best wishes,

Jo

Ovacome support

[OvacomeSupport Partner My Ovacome Team]

Dear Goodgirl98,

Thank you for your post, I can see several members have left helpful information for you.

We would suggest speaking to your clinical team about the tests available to you, and to find out which would be most suitable in your situation. They will be able to give you the most accurate information. They will also be able to direct you to any clinical trials that you can get involved in in this area.

If you have any questions you can get in touch with our support service using [e-mail]

Best wishes,

Jo

Ovacome support

[Goodgirl98 in reply to OvacomeSupport]

thanks, dear Jo. I will do so.